Brown and Pink Polka Dots : Upcoming surgery

Lydia's list for next Thursday keeps growing!

Here is what is going on:

1. She is having and EGD with stomach and throat biopsies. We are trying to figure out why she has intermittent GI bleeds and why she ends up with bloating issues that keep her up some nights. There are some days where she will look very pregnant because of how bloated and hard her stomach is. We haven't looked around in her stomach since she was 3mo old and since she is having issues it is time again.

2. An echo of her heart. At our hospital they do echos before age 2 sedated so at first our plan was to do it after her birthday however since her EGD was scheduled we decided to move it up and do it at the same time thus insuring she will lay still so we can get good pictures of her heart murmur.

3. A muscle biopsy, likely of her leg. This was not added until today. There has always been talk that someday she would likely need a muscle biopsy but it has always been talked about as a future event. I asked SN to check in with our team to make sure no one else wanted something while she was already in the OR and I got a message today from genetics asking for my permission to do a muscle biopsy.

Honestly I was fine about the surgery until I gave consent for the muscle biopsy because the other things seams so normal (I guess thats what happens when between your two kids they take 9 trips into the OR in 5 years) but the muscle biopsy sank me. And honestly that frustrated me.

I understand the thoughts and logic behind the muscle biopsy. I understand why they are doing it and I understand that no one jumped to doing this, this has been talked about for almost 2 years. I knew it would come someday.

But I am coming into this biopsy with a much different outlook then I did for Jilli's... partially because I don't feel as desperate for a diagnosis as I once did... I still think one would be helpful, but my heart and mind don't rest on a diagnosis like they once did... all of my hope is not sitting on this test. So while I think this might help provide more data, especially knowing the difference in how Lydia's muscle looks as compared to Jillian's, I don't expect it to give us any diagnostics definite. That makes it a little bit harder though because while I know this will be helpful and in the long run is a good idea and will be helpful in the long run, I know its likelihood of right now helpfulness is small.

I have also already helped one kid through the recovery of this test and know it is hard for them having part of their leg muscle cut out. Jilli handled it like a champ, but it still is more of a recovery then just an EGD. It is also the week before Lydia's birthday and we already have some water park time booked (got a good deal for having been at the water park during the fire) and her birthday party at a park so my hope is that recovery is easy for her like it was for Jilli.

Thankfully the amazing Lisa is working on coordinating things and I know all is in good hands with her on it. I also had GI check with IR today about making sure they have the right tube in stock incase the GJ gets bumped out of place during surgery which can happen sometimes (it has for Jilli). IR said they should have one if we need it but they can not guarantee anything. Prayers please that we don't need a tube next week and that if we do they have the right kind. Also I still need to find out if we need to do a surgery consult first because we had to do one for Jilli's muscle biopsy.

I am annoyed that the message today from genetics hit me emotionally. I wasn't expecting that. I normally am just a do and go person but I had tons of thoughts after getting that message. I am doing better now, I just needed to process for a bit... its one thing to agree to feeding tube surgery because there you see a definitive positive but this is more unknown without it directly solving a problem... I don't know if that even makes sense to anyone but me. What I do know is I trust our team and I know they wouldn't just cut Lydia open.

In other news... we are remodeling our master bathroom!!! When we bought our house it was foreclosed and trashed and the master bathroom had to have water shut off to it because of leaking. We have done a ton of work to our house including redoing another bathroom for Dan when he lived here, but our master bath has sat unusable (there is another full bath on the level of the bedrooms so we have been using that). But one of our goals has always been to fix up our master bath especially since its not our plan to be in this house forever and this bathroom will have to be fixed before we could even think about selling and I would like to get a little use out of a fixed up bathroom before selling! We had some unexpected money come and we decided that instead of buying each other anniversary and mothers/fathers day gifts this year that we would fix up our bathroom. We went to Home Depot the other day and they had a floor model vanity for 75% off so we bought that and have been picking up the other pieces for the bathroom and Brent's goal is to start demo this weekend (everything that is currently in the bathroom needs to come out as well as a half wall and patching of the holes in the wall). I am so excited! We are not doing our dream bathroom... we are doing functional and sellable but I am just exciting for working! To start to prepare for this project this weekend we deep cleaned our bedroom because we were not using that bathroom the area infront of it had become storage so things needed to move and we decided to take that as a time to go through all of Brent and my clothes and pull out things we no longer fit or wear. It feels good to have done a deep purge of stuff. I tried to donate stuff today however the place we donate to was not accepting donations today so we are going to drop stuff off tomorrow... it will feel good to have that done! One of my big goals this year is organizing and decluttering! This is another great step in that goal.

Hey all, we also are still looking for more team members for the Run/walk for Children's... we currently have 13 people signed up and our goal is 30... also our goal is to raise $3,000 and currently we are at $100... if you have ideas for helping grow the number of people on our team our dollars raised for this great cause I would love to hear more!